New curriculum prioritizes tribal sovereignty, cultural respect in scientific research of American Indian, Alaska Native communities

When scientists have conducted research in Native American communities, the process and the results have sometimes been controversial.

There have been a few well-known cases, such as the 1979 Barrow Alcohol Study, in which researchers examined substance use in the tiny Arctic Circle town and issued findings to the press, before briefing the local community. Media coverage interpreting the findings described an “alcoholic” society of Iñupiats “facing extinction,” while the people of Barrow (now known as Utqiaġvik) felt betrayed, and researchers faced questions and criticism.

Then in 1990, members of the Havasupai Tribe gave DNA to an Arizona State University researcher for the study of diabetes; when they learned their blood samples had been used for other studies as well, they filed a lawsuit, ultimately winning a financial settlement and the return of their DNA.

The cases illustrate what to Cynthia Pearson, a research associate professor at the University of Washington School of Social Work, and others are avoidable tragedies. Research among American Indians and Alaska Natives can be a partnership, argues Pearson, who has developed a training curriculum for scientists and members of tribal communities that clearly explains informed consent, tribal sovereignty and culturally respectful study.

“There is a way you can produce and publish results without harming community,” said Pearson, whose article about the new curriculum and a related study appeared online Feb. 20 in Critical Public Health. Myra Parker, a UW assistant professor of psychiatry and behavioral sciences, co-authored the piece.

Cynthia Pearson

The curriculum is now being reviewed for inclusion by Collaborative Institutional Training Initiative Program (CITI), which provides online training in research ethics and conduct to scores of colleges and universities around the world. At the UW, CITI is one of the available trainings that are required for many researchers involved in working with human subjects.

In her article, Pearson outlines her Ethics Training for Health in Indigenous Communities Study (ETHICS). Three expert panels guided the development of the culturally tailored curriculum: one group composed of American Indians and Alaska Natives (AIAN) with experience conducting research in their communities; another composed of American Indians and Alaska Natives, along with outside researchers who worked in AIAN communities; and a third composed of academic Institutional Review Board (IRB) members and ethicists who review AIAN-focused research. Then, in a national study with about 500 American Indians and Alaska Natives (AIAN), that new curriculum was evaluated. The evaluation showed that at first attempt, about 28 percent of the group that took the traditional curriculum passed, whereas among those who took the culturally tailored version, nearly 60 percent passed. The results, she said, helped inform a new training curriculum that aims to enhance research capabilities and increase participation in federally funded studies in Indian Country.

Key to this approach to community-engaged research is clear, concise material that resonates with study participants and stakeholders, Pearson said. That means acknowledging historical trauma, understanding tribal authority and the significance of the community in daily life, and respecting the specific knowledge and values that American Indians and Alaska Natives possess.

Take the concept of risk, as typically outlined in a study involving human subjects. The adapted curriculum defines “group harm” as a risk for American Indian/Alaska Native communities, in which a tribe is identified by the public release of stigmatizing data regarding, say, substance use or at-risk behaviors for HIV. Similarly, the training points to the need to protect locations of research, just as a scientist would protect the name of an individual, because many Alaska Native villages are so small as to be easily identifiable.

When informed community members are involved in every step of the process, Pearson said, there is potential for reducing harm from research while enhancing trust and collaboration, and producing research reflective of community values.

“Originally developed for community members new to research, this training will provide valuable guidance for academic researchers and IRB administrators in the conduct of more accurate and respectful research among AIAN communities,” she said.

The ETHICS study was funded by the Eunice Kennedy Shriver National Institute of Child Health & Human Development. Other authors on the paper were Chuan Zhou of the UW School of Public Health; Caitlin Donald of Oregon Health & Science University; and Celia Fisher of Fordham University.

The curriculum is available for download. For more information, including a trainer’s toolkit, contact Pearson at pearsonc@uw.edu or 206-543-9441.